Jill Daum and her husband John Mann, lead singer of Spirit of the West, pose for a photograph in Toronto on Friday, April 29, 2016. Mann, who was diagnosed with Alzheimer’s disease at the age of 52, died Wednesday. THE CANADIAN PRESS/Nathan Denette

Jill Daum and her husband John Mann, lead singer of Spirit of the West, pose for a photograph in Toronto on Friday, April 29, 2016. Mann, who was diagnosed with Alzheimer’s disease at the age of 52, died Wednesday. THE CANADIAN PRESS/Nathan Denette

Services needed in B.C. for early-onset Alzheimer’s disease patients: doctor, advocates

More patients are being diagnosed with Alzheimer’s at an earlier age

Being told he was too young to have Alzheimer’s disease would always catch Jim Mann off guard, but it was a nurse’s comment dismissing his condition that really stung.

“She looked me up and down and said, ‘Well, you look fine,’ ” said Mann, who was 58 when he was diagnosed with early-onset Alzheimer’s, a term used when the form of dementia strikes people under age 65.

Mann, now 71, said the nurse made the remark in an emergency ward six years ago while he was there for an unrelated concern and mentioned he’d need his wife, Alice Mann, to stay with him because he had Alzheimer’s disease.

Mann is a passionate advocate for Alzheimer’s patients as a volunteer with the Alzheimer Society of British Columbia and said the awareness that Spirit of the West lead singer John Mann, no relation, created before his death this week will go a long way toward educating the public about the condition that can come with a lonely and isolating existence.

“It’s a cognitive disorder,” he said. “It almost gives people licence to make jokes about it or to question the legitimacy of your diagnosis just because it isn’t physical.”

Alzheimer’s patients already face enough stigma but those who are diagnosed at a younger age deal with more of it, Mann said.

“The biggest thing is questioning of the diagnosis because you’re able to have a conversation. The assumption is you don’t have it, period. I had someone say to me, ‘You don’t have a diagnosis. Look how well you’re dressed.’ “

Mann decided to see his doctor when he started becoming increasingly disoriented, disorganized and forgetful, often stopping in the middle of a task in the kitchen and trying to figure out what he was supposed to be doing next and even leaving the stove on.

ALSO READ: Here’s what you need to know about dementia, and ways to reduce your risk

His advocacy work has given him a purpose, and that’s what he said patients need to focus on so they have a reason to get out of bed in the morning.

John Mann, whose work as a songwriter for the Vancouver-based band earned him four Juno nominations, died Wednesday at age 57, five years after he announced he had early-onset Alzheimer’s disease.

In 2016, the documentary “Spirit Unforgettable” captured the toll the disease had on his ability to perform but it is also a great educational tool to create awareness of the ravages of the disease, Jim Mann said.

The singer, along with his wife Jill Daum, also shared their story at events hosted by the Alzheimer Society of B.C.

Dr. Haakon Nygaard, a neurologist at the University of British Columbia’s faculty of medicine, said Alzheimer’s weakens the body because patients often lose their appetite and can’t sleep, becoming frailer and sometimes die of pneumonia or heart failure.

Patients with an early-onset diagnosis face greater challenges because they often have children still living at home and find themselves trying to keep pick-up and drop-off schedules straight while their performance at work also suffers, he said.

However, many of the services available for Alzheimer’s patients are geared toward seniors.

“What’s frustrating for us is that younger individuals have trouble accessing the right resources,” Nygaard said.

More patients are being diagnosed with Alzheimer’s at an earlier age, and that may be because of greater awareness created by John Mann and others, he said.

Sharon Tong, support and education co-ordinator for the Alzheimer Society of B.C., said she links patients and families with resources in Cantonese and Mandarin, though services are also offered in Punjabi.

Shame often keeps people from revealing an Alzheimer’s diagnosis, which is sometimes wrongly connected to mental illness or myths about eating certain foods or having some connection to metals, she said.

In April, the society launched a help line in Chinese that some people feel more comfortable calling rather than asking questions in person, Tong said, adding she also facilitates community workshops and forums with guest speakers including doctors and nurses who provide education.

The society also recently developed an initiative in partnership with the City of Vancouver to train city workers and volunteers on how best to support community members living with dementia.

In January, the Alzheimer Society of Canada will launch an anti-stigma campaign for a third year with the tag line: “I have dementia. Let me help you understand.”

Camille Bains, The Canadian Press

Like us on Facebook and follow us on Twitter.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Comox Valley medical clinics are all open, including the availability to book face-to-face care (i.e. for a physical examination) as per your clinic’s protocol (most clinics operate a “virtual care first” policy). ADOBE STOCK IMAGE
Northern Health launches virtual primary care clinic

Northerners without a family physician or nurse practitioner will now have access to primary care

Demonstrators lined Hwy 16 May 5 to mark the National Day of Awareness for Missing and Murdered Indigenous Women and Girls. (Deb Meissner photo)
VIDEO: Smithers gathering marks Red Dress Day honouring missing and murdered Indigenous women and girls

Approximately 70 people lined Hwy 16, drumming, singing and holding up placards

“Skeena,” by John Hudson and Paul Hanslow is one of five fonts in the running to become the default for Microsoft systems and Office programs. (Black Press Media File Photo)
Font named after Skeena River could become the next Microsoft default

One of the five new fonts will replace Calibri, which has been Microsoft’s default since 2007

The road to Telegraph Creek (Hwy 51) was closed April 15 due to a washout. On May 4, the road was opened to light-duty passenger vehicles during specific times. (BC Transportation and Infrastructure/Facebook)
Telegraph Creek Road opens for light-duty vehicles

Road has been closed since April 15 due to a washout

Gitxsan Nation extends fishing ban for non-Indigenous permit holders indefinitely . (Photo courtesy, Travis Murphy)
Gitxsan Nation extends ban for non-Indigenous fishing permit holders across their territory

The move comes after the province backed away from ongoing discussions with Gitxsan chiefs and DFO

A bullet hole is seen in the windshield of an RCMP vehicle approximately 4 km from Vancouver International Airport after a one person was killed during a shooting outside the international departures terminal at the airport, in Richmond, B.C., Sunday, May 9, 2021. THE CANADIAN PRESS/Darryl Dyck
Homicide team IDs man in fatal YVR shooting as police grapple with spate of gang violence

Man, 20, charged in separate fatal shooting Burnaby over the weekend

RCMP are searching for Philip Toner, who is a ‘person of interest’ in the investigation of a suspicious death in Kootenay National Park last week. Photo courtesy BC RCMP.
RCMP identify ‘person of interest’ in Kootenay National Park suspicious death

Police are looking for Philip Toner, who was known to a woman found dead near Radium last week

Vancouver Canucks goaltender Thatcher Demko (35) makes a save on Winnipeg Jets’ Nate Thompson (11) during second period NHL action in Winnipeg, Monday, May 10, 2021. THE CANADIAN PRESS/Fred Greenslade
Vancouver Canucks see NHL playoff hopes dashed despite 3-1 win over Winnipeg

Montreal Canadiens earn final North Division post-season spot

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

The B.C. legislature went from 85 seats to 87 before the 2017 election, causing a reorganization with curved rows and new desks squeezed in at the back. The next electoral boundary review could see another six seats added. (Black Press files)
B.C. election law could add six seats, remove rural protection

North, Kootenays could lose seats as cities gain more

The Independent Investigations Office of B.C. is investigating the shooting of an Indigenous woman in the Ucluelet First Nation community of Hitacu. (Black Press Media file photo)
B.C. First Nation wants ‘massive change’ after its 3rd police shooting in less than a year

Nuu-chah-nulth woman recovering from gunshot wounds in weekend incident near Ucluelet

Nurse Gurinder Rai, left, administers the Moderna COVID-19 vaccine to Maria Yule at a Fraser Health drive-thru vaccination site, in Coquitlam, B.C., on Wednesday, May 5, 2021. The site is open for vaccinations 11 hours per day to those who have pre-booked an appointment. THE CANADIAN PRESS/Darryl Dyck
COVID vaccine bookings to open for adults 40+, or 18+ in hotspots, across B.C.

Only people who have registered will get their alert to book

Dr. Victoria Lee, CEO of Fraser Health, hosts an update on efforts to contain B.C.’s COVID-19 transmission in Surrey and the Fraser Valley and protect hospitals in the Lower Mainland, May 6, 2021. (B.C. government video)
B.C.’s COVID-19 infection rate slowing, 20 more people die

Deaths include two people in their 40s, two in their 50s

Most Read